Friday, July 06, 2007

Runner's Autism - An Ever Present Autism Danger

I have never heard of "Runner's Autism" as described in this article in the Bowie-Blade news from Maryland. The article tells the story of a six year old autistic boy with a compulsion to run away. According to the article, doctor's refer to this as "Runner's Autism" which would appear to be a very informal description of a pattern observed by practicing doctors and not a recognized condition on the spectrum of Pervasive Developmental Disorders. But the danger of an autistic child running away into traffic and other dangers is a common one often present for autistic chidlren.

Many parents of autistic children, whether their children fit the "Runner's Autism" pattern of autism or not, live in constant fear of the possiblity that their child will wander into traffic with no appreciation for the danger it presents. Or be lost to the many other hazards that the world can present to a child with out an appreciation of danger.

I have commented before about a personal experience from a few years ago when, alone in charge with my son, and preoccupied with a business call, I did not notice that he had left the house. When I called 911 I learned he had crossed a busy nearby street and was safe in a local convenience store. A good samaritan had stopped his vehicle and helped him to safety inside the store where I picked him up. (The good samaritan remained until I arrived then turned and left quickly before I could thank him.) I had never experience such powerful feelings of fear and guilt before in my life. And the memory is never totally removed from my daily consciousness.

'Please help keep him safe'

By DAVID EMANUEL Staff Writer

Six-year-old Jeffrey Schwartz, who lives on Crimson Court just off Old Chapel Road, keeps trying to run away from home.

And he literally can't help it.

Schwartz has a rare form of autism that doctors call "runner's autism," meaning that, especially in children, anytime they feel they can "escape," and see an open door or window to climb out or fence to climb over, they will do just that.

His parents are extremely worried. And exhausted.

"When you see him walking down the street, you'd just think, there he goes walking to grandma's house, or something like that," said his mother Lori.

But what you don't know is that Lori and her husband Jeff are running around frantically searching for the youngster.

The Schwartzes have spent tens of thousands of dollars on such escape-prevention methods as a search and rescue dog and a 6-foot privacy fence, which Jeffrey is now trying to climb on his own.

"We watch him like hawks. He just tries to trick us now, and he's actually getting crafty, even though he doesn't mean to," said Lori. "He runs down hallways and hides in rooms and tries to disappear so he can escape."

Lori said Jeffrey gets out, it seems, every hour of every day.

"He wears us out," she said. "He runs into the woods. He gets tired. We get tired. And we get so nervous. It's just really hard in so many ways, looking after him, trying to control him. And the doctors say this is a very rare characteristic of autism."

All children with autism have different characteristics that are magnified during certain "events," she said.

"Seeing an open door, in Jeffrey's case, is like that door is calling his name," she said.

Lori said that when you first meet Jeffrey, your initial impression is that he's a beautiful, healthy little boy who's normally very, very good. (This reporter, who spent some time with Jeffrey and one of his therapists, couldn't agree more.)

"But as soon as he sees a window or a door open just a crack, he has to run toward it and try to get out. He doesn't stay still in one place for very long, and as soon as there's that opportunity to run outdoors, he will. He's very much all over the place," said Lori. "In the woods, around Samuel Ogle Middle School, at the Crescent Market."

Lori said it's often impossible to perform a simple task like washing dishes without, in a matter of seconds, her turning around and finding Jeffrey gone or in his room ripping things apart, desperately trying to get out or find a way out.

"His siblings try to help, neighbors always help, and it's not like we're not constantly watching him and keeping vigil. It's not that this is a high-maintenance or high-functioning child. He is very unaware of the dangers surrounding him," said Lori. "We are trying to do everything we can, and we don't know what else to do at this point or where to turn. And it seems that whenever we turn around, we're looking for our son." And he's clearly a danger not only to himself, but to others.

One day, worries Lori, he's just going to not run into the woods, but dart right into traffic.

This is not the outcry of a tired mother, she said. This is something far more than that.

"I don't know how or when this will stop. I feel it's very out of control," she said. "Friends and neighbors and people from church have been very helpful, working for him, picking up after him, looking after him, or looking for him. Chasing him has become a game, and when you catch him it's like he lost the game and is going to try again. He runs, he gets out, he sees the big world, he wants to be in it, and he doesn't want to be caught."

And, she added, "I don't want child services at our door, and accuse us of neglect when we've put every hour and minute of our life into this." And just about every dollar.

The family spends at least $5,000 a month for therapy, has attended workshops, visited doctors in various parts of the country, and has already spent $12,000 for the search and rescue dog. The huge fence that surrounds their yard cost thousands more.

Several interruptions in academics and socialization programs have also put him further behind, and Jeffrey has had to be "retaught" certain things.

Now, the family has made up several bumper-sticker-sized fliers (they are being distributed throughout her neighborhood and are also available at the Blade-News office at 6000 Laurel-Bowie Road).

Jeffrey is pictured in a bright yellow shirt, the color now of all of his shirts, for easy identification, and also wears an ID belt with his name and additional phone numbers around his waist.

"He is fast, determined and has no sense of danger," it says on the flier. "He does not talk or communicate well and will try to run from you. Please do not lose track of him."

Jeffrey likes gummy candy, chips and fruit drinks but can have no dairy or wheat/gluten products.

Lori again stresses that she does not want to be seen as an unfit parent who cannot keep track of her child.

And she has gotten "the looks" from people.

But she has also gotten the understanding shoulder from doctors, friends - and especially others she has met who have experienced this same terrifying scenario, over and over again.

"I love my child," said a faithful yet despondent Lori. "And I have faith, and I know people will do the right thing out there."

101 Noteworthy Sites on Asperger's & Autism Spectrum Disorders

Facing Autism on Facebook

Why ABA For Autism?

The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders

"We have to look also at environmental factors, and from my point of view, the interaction between the genetic factors and the environmental factors ... It looks like some shared environmental factors play a role in autism, and the study really points toward factors that are early in life that affect the development of the child"
Joachim Hallmayer, MD, associate professor of psychiatry at Stanford University in California

Even Out Environmental and Genetic Autism Research Funding

Right now, about 10 to 20 times more research dollars are spent on studies of the genetic causes of autism than on environmental ones.

We need to even out the funding.

Irva Hertz-Picciotto, UC Davis M.I.N.D. Institute Researcher

My Autism Pledge For Conor

Today I pledge to continue;I Pledge to continue to fight for the availability of effective autism treatments;I Pledge to continue to fight for a real education for autistic children;I Pledge to continue to fight for decent residential care for autistic adults;I Pledge to continue to fight for a cure for autism;I Pledge to continue finding joy in my son but not in the autism disorder that restricts his life;Today, and every day, I Pledge to continue to hope for a better life for Conor and others with autism, through accommodation, care, respect, treatment, and some day, a cure;Today, and every day, I Pledge to continue to fight for the best possible life for Conor, my son with autistic disorder.

Dr. Jon Poling : Blinders Won’t Reduce Autism

"Fortunately, the ‘better diagnosis’ myth has been soundly debunked. ... only a smaller percentage of this staggering rise can be explained by means other than a true increase.

Because purely genetic diseases do not rise precipitously, the corollary to a true autism increase is clear — genes only load the gun and it is the environment that pulls the trigger. Autism is best redefined as an environmental disease with genetic susceptibilities."

We should be investing our research dollars into discovering environmental factors that we can change, not more poorly targeted genetic studies that offer no hope of early intervention. Pesticides, mercury, aluminum, several drugs, dietary factors, infectious agents and yes — vaccines — are all in the research agenda.